Congenital heart defects (CHDs) are the most common type of major birth defects worldwide. Yet globally, access to high quality treatment is very limited and uneven with most patients living in places without adequate diagnostic or treatment. Based on ethnographic engagement with Beninese and Togolese children undergoing surgical treatment in Switzerland through a humanitarian medicine programme, this paper explores the multiple temporalities and experiences of chronicity at play in the lived experiences of families with children with CHDs in a context of profound health inequalities. These temporal experiences encompass the various promises of a cure made to them, ensuring continued investment in their child’s health, experiencing a sense of rebirth, and navigating the potential risks of future complications. The article highlights how families facing CHDs in underserved regions encounter distinct forms of chronicity compared to those in more privileged areas. It identifies four kinds of chronicity in the families’ lived experiences: symptom-related, procedural, follow-up, and emotions-related.
Illness is fluid. It can cross bodily boundaries, across space and time, and permeate entire families and communities. This is especially apparent in places where people have come to rely on one another in order to withstand austerity and state disregard. Here I share a creative revision of field notes from home visits with a family living with debilitating illness in rural Guatemala. Through their experience, I contemplate how vulnerability and illness are not merely hardships to be endured but can also be conditions productive of collective action, resistance, and new forms of belonging.
In this Field Note, I take the opportunity to reflect on some of the concrete dilemmas that I was faced with in trying to negotiate, secure and maintain access to my field-site. These reflections derive from my engagement with infectious diseases physicians, at a renowned corporate tertiary care hospital in Southern India, who are working towards mitigating antibiotic/antimicrobial resistance. By drawing on the difficulties of felicitously translating my concerns, as an ethnographer, to the epistemological universe that animated (but did not wholly determine) my site of investigation allows me to think through what might or might not emerge as strategically useful in the varied loci that anthropologists are increasingly engaged with.
Precision medicine is a field of future promise. Its imaginary is that ‘health data saves lives’. But which lives and at what costs? In this position piece, we direct attention to how non-imagination (Prainsack 2022) operates in the field of precision medicine. We argue that central actors in the field, along with social scientists researching it, non-imagine the relevance of environmental collapse to the pursuit of precision medicine, despite its huge energy consumption and focus on prolonging human lives in places that contribute the most to climate change. This non-imagination raises questions about how we as medical anthropologists approach and theorise the ‘life politics’ at the centre of anthropological studies of the life sciences. In light of the current ecological peril, we advocate for extending the discipline’s focus from the governance of life in politics, labs, and clinics to the governance of ‘earth-life’.
This article is about anthropological research ethics amid the simultaneous hyper-valuation of young people’s voices and the disarticulation (the process of making inarticulate) of their mental health needs. I reflect on my experience of recording a podcast about mental health treatment with young people in a moral context where ‘voicework’ was prominent. Following feminist critiques of ‘voice’ and ‘choice’, I argue that critical concerns usually associated with ‘giving voice’—authenticity and empowerment—are limiting as means of ethically relating to needs, since they presume personhood rests on coherence, intentionality and articulate expression. Instead, I resolve to adopt a research ethics that focuses on articulating needs, rather than platforming voices. This account urges researchers—myself included—to do better in confronting the non-responsiveness of care systems.
Emma Kowal’s Haunting Biology: Science and Indigeneity (2023) investigates the history of biological and medical research about Indigenous peoples in Australia. This book forum invited contributors to provide nuanced insights that engage the book’s central contributions to debates in medical anthropology about decoloniality and racial science. Bringing together medical historians, anthropologists, and scholars of science and technology Trevor Engel, Beth Greenhough, Frederic Keck, and Ros Williams, the forum’s contributors highlight the profound utility of Kowal’s insights and the necessity of attending to the spectral presence of the colonial-era ghosts that haunt the ground on which contemporary biological science, including genetics and epigenetics, is practised. The forum contributors draw out the multivalent affects that ghosts provoke, brought to presence through Kowal’s ethnographic observations and rich archival research. They engage ghostly characters like British scientist Baldwin Spencer, who sits out of sight but not out of mind in a museum storeroom, and surgeon and Australian anatomist Sir William Colin Mackenzie, who haunts the dreams of Goenpul Indigenous filmmaker Romaine Moreton. Each contributor shows the productive tension gained by following Kowal’s directive to listen to these and other ghosts around us, and gesture towards the possibilities of decolonial scientific practices.
During research on love songs and political poetry in Somaliland, one of my closest interlocutors has been a poet named Weedhsame who describes his work as arising from a duty to ‘give voice to the voiceless’. Collaborating with a musician and singer to ‘give voice’ to otherwise mute love-sufferers, Weedhsame is revered as a ‘love doctor’ whose words provide therapeutic relief to his ‘patients’. His political maanso poems also powerfully ‘give voice’—sonically and textually—to the otherwise inaudible concerns of marginalised communities. My conversations with Weedhsame have provided me with a compelling emic perspective on what it means to ‘give voice’ to others, and the intimately social work of vocal mediation. They have also challenged me to think about my own anthropological voicing practices. In this reflection, I use my conversations with Weedhsame to consider the politics and practices of ‘giving voice’ in Somaliland, in matters of love and politics, before turning these lessons back on my own practice. I focus especially on what these practices might mean for how anthropologists gather, assemble and sound the stories and ‘voices’ of others in our work.
Based upon an ethnography of two biomedical, scientific research institutes in Uganda funded primarily by donors in the Global North, this article examines the political economy of knowledge production in global health science. Specifically, I use the concept of precarity to illustrate the ways in which funding instabilities for scientific research shape the making of knowledge. I do this at three levels: the macro level of funding institutions, the meso level of research institutes, and the micro level of individual projects. Through analysing the experiences of researchers in these institutional environments, I elucidate the ways in which the political economy of global health science—particularly short-term, grant funding—constrains and enables knowledge production. I thus argue that for many scientists the priority of renewing or obtaining funding supersedes that of conducting research that is closely tied to local issues. Whilst I do not contend that the latter is unimportant to scientists, this article highlights the existential precarities fomented by the possibility of not being funded and argues that they play a substantial role in influencing the foci of global health science research projects, thus alienating them from the needs and interests of the people they are intended to benefit.
This article explores the profound impact of menstruation and menopause on people’s sense of self, as shaped by the lenses of medical experts and advocates of the cyclical living movement. Drawing from personal experience of premature menopause, it reflects on the narratives surrounding reproductive health and the cultural significance attached to these bodily transitions. The article moves beyond a discussion of the complex emotions associated with the loss of reproductive potential and highlights a less often discussed topic in this age of fem-tech: the perceived missed opportunity for self-exploration through the menstrual cycle, for people who do not menstruate (any longer).
In this article we examine how patients of elective orthopaedic surgery might transform the understanding of their body’s fixability over time. The article builds on an ethnographic fieldwork at an elective orthopaedic unit in Denmark and follow-up interviews with two patients eighteen months after their surgery. Through the affective theoretical framework of Lauren Berlant’s Cruel Optimism, we discuss how the patients experience the part-loss of functionality. We trace the transformations in their expectations of their body through their use of metaphors. Drawing on Alan Bleakley’s division of the metaphors of the body into ‘body-as-machine’ and ‘body-as-ecology’, we argue that patients end up describing their bodies through both these metaphors, and come to understand their bodies as not being fixable, but as being in ongoing process.
‘Giving voice’ can be an empowering metaphor for the process of creating space for another’s perspective, allowing for their experience to be noted and attended to. Yet it is also a metaphor that relies on a particular form of articulation. Voice and narrative share many of the same strengths and limitations: for some, they are powerful tools of sense making and communication; but for others they can elude important forms of experience and fail to capture many of the more inchoate aspects of lived life in general. What happens in those moments when words fail, or are simply absent? In addressing this question via fieldwork in a community space in Osaka, I explore how silence can constitute an affective space of care. Shared silences are felt in their duration, the passing of time brings them about. In these contexts, silence is not merely an absence, but an index of presence.
What can we learn about the therapeutic landscapes of in-patient psychiatric care by focusing on the invisible, the seemingly unimportant? To explore how mental affliction and caregiving acts are connected to other-than-human dimensions and sensory experience, I analyse the role of trees and forests in a Swiss in-patient psychiatric clinic. Using ethnographic vignettes and introducing the forest as a therapeutic landscape, I discuss the role of trees in a ward’s day-to-day life, a psychiatric sufferer’s modes of self-perception in the forest, and a physiotherapist’s active ‘tinkering’. My central argument addresses a problematic element in the research on psychiatric care in Switzerland: it is largely devoid of anthropological attentiveness to sensory perception and the atmospheric. I propose an alternative view where the experiences of illness, recovery, and violence are fundamentally co-created by a sensory context—including its marginalised, nonhuman, and atmospheric dimensions—and a conceptual framework informed by an anthropological adaption of feminist notions of ‘matters of care’ as well as sensory and ecological anthropology.
Since the beginning of the COVID-19 pandemic in Vietnam, the media has meticulously covered disease prevention and reported on infection cases. This article will explore the current and shifting gender relations of Vietnam’s state and societal expectations by comparing Patient 17, a female Vietnamese citizen, and Patient 91, a British male pilot. While Patient 91 has received sympathy and international acclaim, Patient 17 has been heavily criticised and shunned from Vietnamese society. Through these case studies, I seek to understand how individual patient cases reflect the nuances of nationalism in Vietnam and how online citizens interpret the quintessential traits of Vietnamese character. Drawing on media analyses from an online news outlet, I delve into themes of media representation, gender, class, and race. By exploring how media coverage and online commentators shape perceptions of these patients, I aim to shed light on how patient stories can transcend individual experiences and become emblematic of broader societal ideals.
Images are increasingly used in health research as a complement to discursive methods, to elicit more and different types of knowledge and experience from participants. The use of image-based research, such as drawing and photography, then, holds promises for understanding health in new ways. However, such promises fall short when researchers and audiences treat images as realist representations of participants’ lives. Images are never clear representations of an objective reality- this is not their value either during or after research. In this photo essay, we show and discuss how we countered image positivism in the PHRAME study, Photographing Health by Rural Adolescents in the Midwest. The photos shown in this essay take viewers into our interviews in PHRAME and then out to our modes of audience engagement. Throughout, play served as a critical orientation and form of listening. We show this, first, through glimpses into our interviews, where we engaged in play that transformed meanings of photos taken by the young people. Then we show how we engaged public health, academic audiences, and popular audiences of the young people’s photos in play where audiences were invited to co-produce meaning through interactive activities, rather than reading to extract meaning from the photos. In conclusion, we suggest that play as a mode of research and exchange holds transformative potential, taking health research beyond the image positivism that has constrained the methodology to expand visions of what health is and might be.
Uncertainty, disavowal, forgetting, and stigmatisation are common responses to toxicity: dumping grounds are habitually portrayed as ‘strange, alien spaces with no comprehensive histories’ (Little and Akese 2024). How can we best face this strangeness? What are the methodological and theoretical tools we would need to do so? Three recent volumes offer provocations for anthropologists of toxicity from phenomenological, activist, and heritage management standpoints.
In this article, I investigate the case of a deaf woman, Silivia, who lived in western Uganda. Silivia did not use standardised sign language and was commonly considered to be ‘mad.’ However, some of her interlocutors disagreed, arguing that perceptions of madness arose because those around Silivia did not invest enough in attempting to communicate with her. I use experiential and analytical reflection on the methodological challenges of working with Silivia to explore what difficult moments tell us about how communication and everyday assessments of cognitive function are mutually implicated for deaf people in Uganda. Adopting a theoretical approach that understands languaging as a collective or distributed process, I argue that comprehensibility is not something that is determined by the qualities of a person’s expression, but rather something that happens to and through communication, mediated through social and environmental constraints. These include normative linguistic ideologies and frames of comprehensibility that may encode ableist expectations (for example, that ‘good’ communication is quick and efficient). In this context, I argue, interpretative difficulties that arise in the use of less conventionalised forms of visual languaging make some deaf people particularly subject to stigmatisation.
Digitally tracking food and eating has become a widespread activity. Scholars in anthropology, sociology and science and technology studies have problematised the personal and social implications of dietary tracking and the metrification of food and eating. Metrification has contributed to the emergence of new types of relevant expertise and new experts of eating and health. This warrants in-depth research to better understand the forming, negotiation, establishment and effects of new expertise. Drawing on a sociomaterial perspective, this article explores these questions by reflecting on the development of an automated dietary tracking and intervention app. The article focuses on seeking feedback on mock-ups and prototypes of the app from potential users and non-users in ‘go-alongs’ and interviews, and in focus groups. The analysis revealed that the delegation of dietary expertise to an automated system poses a challenge for many participants. They emphasised what is neglected in the process—including their dietary but also bodily and sociocultural expertise. Our study contributes to an understanding of how dietary tracking and delegating expertise to an automated system appeals to users whose food values align with metrics used in the app but also users who accept to delegate specific forms of care to the technology.
Data constitute a crucial resource in healthcare systems increasingly reliant on digital technologies powered by artificial intelligence (AI). However, before these technologies can be used, they need to be ‘trained’ on large datasets assembled by individuals often working from home utilising their expertise to ensure that technologies work as they are designed to. Amidst recent enthusiasm for the adoption of AI in healthcare, little attention has been paid to the expertise and plight of these data workers. As I argue in this position piece, researchers have an important role to play in analysing and bringing to public attention the expertise possessed by those who curate content needed to power AI in healthcare and the affective demands and potential harms they face in undertaking this work. I discuss recent efforts to address the working conditions of data workers in general and suggest that the International Labour Organization could help develop standards, policies and programs to protect these individuals. As I conclude, making visible the expertise of data workers in healthcare will assist to both improve their lives and increase public awareness of the fact that AI would not exist without their contributions.
